The results are back from the bone marrow biopsy and the results are good, there are no detectable plasma cells in the bone marrow, the doctor says I am in complete remission. The hope was to have 10% or less, but they are currently non-detectable. This is the best position to be in before the stem cell transplant.
I am currently off all drugs and looking forward to lots of energy in the next three weeks before the stem cell transplant process starts. They stopped all drugs to allow the stem cell collection to go smoother, some of the drugs make it harder to collect stem cells.
I have sailed through the first part of the journey, I believe the second part will be a bit harder, but I am ready for it to be done.
Tuesday, June 21, 2011
Saturday, June 18, 2011
June 2011 - The Actual Tests
Yesterday was my visit to Rush for required tests and meetings to prepare for the stem cell transplant. The tests were no big deal, though dealing with some people give me concern. I have to say all the technicians performing the tests were great people.
Here is how my day went.
- Arrived at the hospital at 7:00 am
- Registered for my first appointment
- 7:05 Vitals and Blood Draw. This is were things start to get intresitng. The nurse prints out labels for my blood draw, fifteen labels = fifteen vials of blood. The nurse then leaves to get the Phlebotomist. The Phlebotomist comes in, reads the labels chuckles and then leaves the room. She comes back and I inquire about what was so funny and come to find out one of the blood tests to be drawn was a pregnancy test.
- 7:30 Next it was off to meet with the patient coordinator (SD). We have 30 minutes before my next appointment. She informs me that my schedule for today has changed, due to the fact that she has to leave early today to go play golf with her Dad, really? I know it fathers day weekend, but really? So we start getting some papers signed early in the time we have.
- 8:00 off to the pulmonary function test. This test was rather easy, basically I sat in a glass box and did breathing in a tube through my mouth with my nose pinched shut. Below is a picture of the actual box I sat in.
Once in the glass booth I had to breath normally, inhale and exhale as deep as I could. Just when you think you have exhaled all the air from your lungs the technician tells you to keep going.
- 9:00 Psychosocial Meeting, believe or not this was one of my highlights of the day. This doctor was fantastic. She suggested services we were not aware of and truly had concern for my well being. She also suggested I start taking a new medicine and would talk this over with SD and Dr. HF. She knew a lot about the stem cell process and helped me prepare for the days to come. I believe this meeting went longer than expected, but it was time well spent.
- 10:00 back to meet with SD, so she can leave early, this was a change from the original schedule. SD already has the prescription for the new drug from the 9:00 meeting, funny since Dr. HF is out of the office today. We go over some more papers and then I sign the papers. We have a few minutes for some of my questions, but we are starting to run late for the next appointment. The tour of the unit were I will be staying has to be postponed until the next visit.
- 11:15 or there about. Time to meet with the surgeon who will put in the central line. This is somewhat of an interesting visit. First the nurse that works with this doctor is either new or very frazzled. She has to enter my medications that I take into the computer, at times I don't think she is familiar with the medication names. Next she tries to take my temperature but is unsure how to use the device and eventually gives up. Then she tries to take my blood pressure and states she will have the doctor do it since he is much better at this than her. Where am I, did I just enter a new dimension? Next the doctor comes in, seems to be upset that we were late for the appointment. He explains how and were the central line will be placed and has a sample central line so we know what it looks like. He takes my blood pressure and it is high, which gives him concern and states I should alert this to my primary doctor. Next he has a paper with the surgery date of July 6th, I state that I thought the surgery was scheduled for July 7th. He checks something comes back and agrees it will be July 7th. I also remember the new prescription I just received and bring that to the doctors attention. Not remembering the drug name I have to pull the prescription out to show him. He asks, did you see Dr. HF today; he knew he was not in; and I state no I did not. I think I might have gotten someone in trouble. I do not leave this appointment with a level of comfort.
12:30 - time to switch buildings and find the nuclear medicine department. On our way to nuclear medicine we pass a cafeteria and grab a quick sandwich, what a relief I thought I was going to miss lunch.
1:00 - Muga Scan. I register and proceed to the waiting room. I start to read the paperwork as we wait and notice my diagnosis is listed as Hodgkins Lymphoma, though I don't think this has anything to do with how the scan will be done I bring this up to the technician. He agrees that it does not impact the test, but he would get it changed. The Muga scan test is another easy test. I lay down on a table, the technician draws a vial of blood. He then mixes the blood with a isotope (marker) which takes about 15 minutes. Then he injects the blood back into my body. Next three leads are attached to my chest, then I am slid into or near the machine that will take pictures of my heart. Each picture takes ten minutes and two pictures are taken. Below is a picture of the machine used.
2:30 - EKG. The quickest test by far. The technician puts ten leads at different points on my body. One on each leg, two at the top of the chest and the rest at different points on the left side of the chest. After the leads are hooked up, she runs the test, which seemed like 30-60 seconds and then she removes the leads.
3:00 - Chest X-Ray. Another quick test, though this part of the hospital seems to be very old and outdated. The test is rather simple, stand in front of the X-Ray machine and the picture is taken.
That is it, the day of testing is complete.
Here is how my day went.
- Arrived at the hospital at 7:00 am
- Registered for my first appointment
- 7:05 Vitals and Blood Draw. This is were things start to get intresitng. The nurse prints out labels for my blood draw, fifteen labels = fifteen vials of blood. The nurse then leaves to get the Phlebotomist. The Phlebotomist comes in, reads the labels chuckles and then leaves the room. She comes back and I inquire about what was so funny and come to find out one of the blood tests to be drawn was a pregnancy test.
- 7:30 Next it was off to meet with the patient coordinator (SD). We have 30 minutes before my next appointment. She informs me that my schedule for today has changed, due to the fact that she has to leave early today to go play golf with her Dad, really? I know it fathers day weekend, but really? So we start getting some papers signed early in the time we have.
- 8:00 off to the pulmonary function test. This test was rather easy, basically I sat in a glass box and did breathing in a tube through my mouth with my nose pinched shut. Below is a picture of the actual box I sat in.
Once in the glass booth I had to breath normally, inhale and exhale as deep as I could. Just when you think you have exhaled all the air from your lungs the technician tells you to keep going.
- 9:00 Psychosocial Meeting, believe or not this was one of my highlights of the day. This doctor was fantastic. She suggested services we were not aware of and truly had concern for my well being. She also suggested I start taking a new medicine and would talk this over with SD and Dr. HF. She knew a lot about the stem cell process and helped me prepare for the days to come. I believe this meeting went longer than expected, but it was time well spent.
- 10:00 back to meet with SD, so she can leave early, this was a change from the original schedule. SD already has the prescription for the new drug from the 9:00 meeting, funny since Dr. HF is out of the office today. We go over some more papers and then I sign the papers. We have a few minutes for some of my questions, but we are starting to run late for the next appointment. The tour of the unit were I will be staying has to be postponed until the next visit.
- 11:15 or there about. Time to meet with the surgeon who will put in the central line. This is somewhat of an interesting visit. First the nurse that works with this doctor is either new or very frazzled. She has to enter my medications that I take into the computer, at times I don't think she is familiar with the medication names. Next she tries to take my temperature but is unsure how to use the device and eventually gives up. Then she tries to take my blood pressure and states she will have the doctor do it since he is much better at this than her. Where am I, did I just enter a new dimension? Next the doctor comes in, seems to be upset that we were late for the appointment. He explains how and were the central line will be placed and has a sample central line so we know what it looks like. He takes my blood pressure and it is high, which gives him concern and states I should alert this to my primary doctor. Next he has a paper with the surgery date of July 6th, I state that I thought the surgery was scheduled for July 7th. He checks something comes back and agrees it will be July 7th. I also remember the new prescription I just received and bring that to the doctors attention. Not remembering the drug name I have to pull the prescription out to show him. He asks, did you see Dr. HF today; he knew he was not in; and I state no I did not. I think I might have gotten someone in trouble. I do not leave this appointment with a level of comfort.
12:30 - time to switch buildings and find the nuclear medicine department. On our way to nuclear medicine we pass a cafeteria and grab a quick sandwich, what a relief I thought I was going to miss lunch.
1:00 - Muga Scan. I register and proceed to the waiting room. I start to read the paperwork as we wait and notice my diagnosis is listed as Hodgkins Lymphoma, though I don't think this has anything to do with how the scan will be done I bring this up to the technician. He agrees that it does not impact the test, but he would get it changed. The Muga scan test is another easy test. I lay down on a table, the technician draws a vial of blood. He then mixes the blood with a isotope (marker) which takes about 15 minutes. Then he injects the blood back into my body. Next three leads are attached to my chest, then I am slid into or near the machine that will take pictures of my heart. Each picture takes ten minutes and two pictures are taken. Below is a picture of the machine used.
2:30 - EKG. The quickest test by far. The technician puts ten leads at different points on my body. One on each leg, two at the top of the chest and the rest at different points on the left side of the chest. After the leads are hooked up, she runs the test, which seemed like 30-60 seconds and then she removes the leads.
3:00 - Chest X-Ray. Another quick test, though this part of the hospital seems to be very old and outdated. The test is rather simple, stand in front of the X-Ray machine and the picture is taken.
That is it, the day of testing is complete.
Thursday, June 16, 2011
June 2011 - Test Time
Things seem to be moving fast, and the stem cell transplant is approaching quickly now. I had another bone marrow biopsy on Tuesday of this week, won't get the test results until next week, at least I hope to get the results next week. I have an appointment with the local doctor on Monday 6/20.
Getting ready to spend the day in the city tomorrow (Friday 6/17) for a full day of testing. I need to arrive at the hospital by 7:00 am. The day looks something like this:
7:00 Register, vitals and blood draw
8:00 Pulonary Function Test
9:00 Psychosocial Consult
10:00 Chest Xray
10:30 EKG
11:15 Surgery consult (for central line)
1:00 Muga Scan
2:30 Consent signing and tour of bone marrow transplant unit
4:00 Back on the road home, just in time for rush hour on Friday.
What is a central line you ask? Of all of the stuff I have to go through in the next month the central line and the high dose Chemo are my two least favorites. The central line is a catheter they will surgically implant in my neck / chest. They will put this in on July 7th and hopefully remove it when I am released from the hospital.
Once the central line is in place, it is used to extract the stem cells, blood draws, administer medications and to put the stem cells back. I am sure there are other purposes also.
Well if you read my last post you understand how I am know the patient liaison between the local doctor and the stem cell transplant doctor. It even gets more interesting, I had a list 13 blood tests that were ordered last week, the blood was drawn at the local hospital. Well it seems the hospital did at least one test in in error (a test that was not on my orders, who pays for this one?) and missed a few tests that were on the orders. I wondered why there was 13 tests and only 8 vials of blood, maybe the blood can be shared among tests or maybe not. Rush will draw the blood tomorrow for the missing and tests done in error? I feel I need to have my orders with me and ask the Phlebotomist what each tube of blood is for. Do you think this stuff happens all the time, kind of scary when your life depends on the tests they are doing.
Well I will post an update after tomorrows visit.
Getting ready to spend the day in the city tomorrow (Friday 6/17) for a full day of testing. I need to arrive at the hospital by 7:00 am. The day looks something like this:
7:00 Register, vitals and blood draw
8:00 Pulonary Function Test
9:00 Psychosocial Consult
10:00 Chest Xray
10:30 EKG
11:15 Surgery consult (for central line)
1:00 Muga Scan
2:30 Consent signing and tour of bone marrow transplant unit
4:00 Back on the road home, just in time for rush hour on Friday.
What is a central line you ask? Of all of the stuff I have to go through in the next month the central line and the high dose Chemo are my two least favorites. The central line is a catheter they will surgically implant in my neck / chest. They will put this in on July 7th and hopefully remove it when I am released from the hospital.
Once the central line is in place, it is used to extract the stem cells, blood draws, administer medications and to put the stem cells back. I am sure there are other purposes also.
Well if you read my last post you understand how I am know the patient liaison between the local doctor and the stem cell transplant doctor. It even gets more interesting, I had a list 13 blood tests that were ordered last week, the blood was drawn at the local hospital. Well it seems the hospital did at least one test in in error (a test that was not on my orders, who pays for this one?) and missed a few tests that were on the orders. I wondered why there was 13 tests and only 8 vials of blood, maybe the blood can be shared among tests or maybe not. Rush will draw the blood tomorrow for the missing and tests done in error? I feel I need to have my orders with me and ask the Phlebotomist what each tube of blood is for. Do you think this stuff happens all the time, kind of scary when your life depends on the tests they are doing.
Well I will post an update after tomorrows visit.
Saturday, June 4, 2011
June 2011 - My Second Job
Who knew I had more than one job, well my second job I don't get paid for in dollars, but have other rewards.
I have found out this week that no matter how much insurance pays the doctors it is still my job to make sure the doctors talk to each other and order the tests that each other requests. I have a local hematologist (PM) who administers treatments and performs monthly checkups. I have a transplant doctor at Rush (HF) that will perform the actual transplant. I also have patient coordinator (SD) at Rush, who is responsible for scheduling all tests and taking care of all logistics with the transplant.
Here is the problem and where my second job comes in. SD sent PM a letter on May 12th listing all the tests that need to be done before I can proceed to Rush. SD called me one week ago last Thursday to see how things were going in cycle 4 and stated she was scheduling some pre-transplant tests for Friday June 17th at Rush. These tests are done to make sure my heart, lungs, kidneys...are healthy enough for a transplant. SD stated she would call me back on Friday or the Tuesday after Memorial Day. Well Thursday rolled around last week at still no call from SD, so I called her. Things are all set for June 17th, and she wanted to know if I had my tests scheduled that needed done locally with PM. These tests are used to stage the disease before the transplant. Well as far as I knew nothing had been scheduled. SD stated the tests need to be done on June 13th and she needed the results by June 20th. I had to go to PM's office Friday for a treatment, so I checked to see if the tests had been scheduled. Well at first glance at my file I was told they had not received the letter from SD. Then they tracked down the doctor and found he had the letter, but nothing had been scheduled and no orders had been placed for the tests. PM assured me he would place the orders and that I could schedule the tests next week at the local hospital, which I plan to do Monday morning. I have my fingers crossed that PM follows through in a timely manner.
Here is how I thought the above would happen. SD would contact PM. PM would schedule the tests and call me with the dates and times. I guess it is my job to make sure the tests are scheduled and scheduled on time.
The other thing SD told me is we are sticking to the dates she had originally gave me and starting July 7th I should plan to be off for 3 months.
I have found out this week that no matter how much insurance pays the doctors it is still my job to make sure the doctors talk to each other and order the tests that each other requests. I have a local hematologist (PM) who administers treatments and performs monthly checkups. I have a transplant doctor at Rush (HF) that will perform the actual transplant. I also have patient coordinator (SD) at Rush, who is responsible for scheduling all tests and taking care of all logistics with the transplant.
Here is the problem and where my second job comes in. SD sent PM a letter on May 12th listing all the tests that need to be done before I can proceed to Rush. SD called me one week ago last Thursday to see how things were going in cycle 4 and stated she was scheduling some pre-transplant tests for Friday June 17th at Rush. These tests are done to make sure my heart, lungs, kidneys...are healthy enough for a transplant. SD stated she would call me back on Friday or the Tuesday after Memorial Day. Well Thursday rolled around last week at still no call from SD, so I called her. Things are all set for June 17th, and she wanted to know if I had my tests scheduled that needed done locally with PM. These tests are used to stage the disease before the transplant. Well as far as I knew nothing had been scheduled. SD stated the tests need to be done on June 13th and she needed the results by June 20th. I had to go to PM's office Friday for a treatment, so I checked to see if the tests had been scheduled. Well at first glance at my file I was told they had not received the letter from SD. Then they tracked down the doctor and found he had the letter, but nothing had been scheduled and no orders had been placed for the tests. PM assured me he would place the orders and that I could schedule the tests next week at the local hospital, which I plan to do Monday morning. I have my fingers crossed that PM follows through in a timely manner.
Here is how I thought the above would happen. SD would contact PM. PM would schedule the tests and call me with the dates and times. I guess it is my job to make sure the tests are scheduled and scheduled on time.
The other thing SD told me is we are sticking to the dates she had originally gave me and starting July 7th I should plan to be off for 3 months.
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